Monday, June 29, 2015

Almost every week, I hear from one or more of you who are reaching out to me for the first time. Sometimes, you're newly diagnosed; other times, you've been following along for awhile but thought now would be a good time to say hello for one reason or another. Thank you for being my community. It is why I do what I do in this little space here.

At the conference I attended in New Jersey back in April, one of the presenters, Susannah Fox, put it along the lines of this: Patients are out there in a sort of darkness. As patient-advocates, you've lit a match and said, "Hey, I'm over here. Let's find our way through this together."
Thank you for finding me. Let's find our way through this.
Speaking of lighting a match...

Thursday, June 25, 2015

I had this entire post written out -- a post in which I admitted I wasn't even sure this was a topic I should broach, no less -- but when my computer died after a day of traveling this week, the post was lost. So I'm starting over, which I guess answers my question to myself about whether I want to talk about racism on a cancer blog.

After all, racism is its own kind of cancer, isn't it?

I thought: This isn't why your readers come here. This is a blog about breast cancer, and sometimes parenting. Does anyone want to hear your opinion on our country's gun laws or its state of race relations? You have such a small voice, anyway. Who would even listen?
Those were the sounds of my self-doubt, that voice in my head telling me to stay away from this one, but I’ve stayed silent for too long and it’s making my skin crawl. Also, if I can reach 10,000 readers a month? 20,000 on a good month? That's something, I think. And it's a conversation worth starting. We are so overdue for honest dialogue about race in this country. Also, I don't know what else to do, so for now, my action is in my words.

I can't quite believe that in 2015, it’s still easier to buy a gun than a car. It means that these terrorists on our own soil make me eye everyone suspiciously when our family goes to the movies, wonder if some rogue nut with a vengeance is going to open fire at a TSA agent every time Chris travels, or worry a little bit every morning I drop Quinn off at school. Our houses of worship aren't even safe.

Guns are one issue and I wish we'd do more as a country to regulate them, but I am not hopeful that things on that front will change anytime soon. So someday I will have to talk to Quinn about gun safety and make sure his friends' parents don't have weapons that could kill him before I drop him off for a play date.

I will also have to talk to Quinn about racism, and hatred, and fear, but not yet. I still want to preserve some of his innocence. I still don’t know exactly what to say. See? There are parallels to cancer.

Here’s the gist of what I want him to understand: he was (and we, his parents, were) born into a certain privilege, even if we have faced some hardships as a family. This is a conversation that will be part of his upbringing as soon as I can find the words. (This analogy to Frozen might help.)

Fifty years after the civil rights movement, our country is still flying the confederate flag over our state capitols. Ours, because as Brené Brown says, “This is not bigger than us. This is us.” This isn’t something we can continue to ignore because we don’t live in Florida, or Charleston, or Ferguson. We can’t continue to blindly believe this scourge isn’t happening in our backyards.

News flash: it is happening.

This is us.

I don't imagine these conversations with Quinn will be simple, or easy.

But certainly our talks will be easier than if we were black. Because then I'd have to warn him about continuing to wear his beloved hoodies, which are decidedly cute on four-year-olds, but might bring grave danger in his teenage years. I would have to talk to my son about how people might not trust his word, value his worth, or see his beauty, how some might even call for genocide simply BECAUSE OF THE COLOR OF HIS SKIN.

Or maybe I wouldn't. Because what mother wants to tell her child any of these things? No mother I know.

On my flight home from Maryland yesterday, I sat on the plane next to an African-American woman and we got to talking about motherhood, and in-laws, and our kids, and cancer, and alopecia. Her youngest is a boy, and he's sixteen. Her oldest is a pastry chef. After a bit, because I was working on this post, I asked her whether and how she'd talked to her son about Charleston. Her eyes got a faraway look and she said, "Not yet. He watches the news a lot, and I'll wait for him to bring it up. 'Til he asks. He internalizes things, needs some time."

Then she changed the subject to the escaped prisoners in New York, how she hopes they don't hurt anyone. We agreed there are some terrible people out there. But also (and mostly) really good ones.

***

What I hope I can do for Quinn until I find the words to talk about guns and cancer and race, what I hope I am doing, is guide his character to be strong, teach him to respond to adversity with grace and resilience and forgiveness. I'm not trying to jump straight to the Kumbaya part or be too Pollyanna-ish, but I believe we have to look for the good. That's one thing almost four years of living with a metastatic breast cancer diagnosis has taught me.

Look for the good. Find reasons to hope.

This is what we can learn from the mourning families in this tragedy, including a daughter who said at her mom's killer's bond hearing:

Monday, June 15, 2015

I've been chewing my nails something fierce lately, and I haven't been able to put my finger on why (no pun intended). Then it hit me when the scheduler from my oncologist's office called this morning: I am due for my three-month scans.

Except this time I'm not having three-month scans. I got bumped to every four months, which apparently in my world is just going to mean an extra month of anxiety. My body is that well-adapted to this cycle. My brain knows just when to start acting on-edge, when nightly Xanax pills might be in order once again. After all, I've been doing this for almost four years now.

So now I'm all thrown off schedule, my right thumbnail is bitten to the quick, and I do have scans on the books five weeks from now. So I better figure out how to get this anxiety under control because I can't take five weeks on high alert. I will literally run out of nails.

I also made the mistake of mentioning this article from last week's round-up to my doctor by way of his assistant, and so my doctor promptly ordered a bone density scan for me. I've never had one, so this will provide a baseline. It is also, predictably, adding to my anxiety. I don't know if it's cancer, or parenthood, or just being in my mid-thirties, but my mind worries about every possible thing that could go wrong, and not just when it comes to scans (from our toaster catching fire, to getting car-jacked at a stoplight because of course, to sinkholes even though we live in Arizona not Florida. The list goes on.)

Anyhow, here's what I saw around the web this week (but I'm not asking my doctor about any of them, lest he order any more tests for me).

"Silva is what researchers call an “exceptional responder,” the rare patient who has a surprising, dramatic response to a drug. . .

Silva’s story, and those of other exceptional responders, have led to an intriguing set of questions: Could researchers use technologies such as genetic sequencing to figure out what made Silva’s tumor respond to treatment? Could they mine that data for clues that might help other patients? Could they ultimately find a way to make the exceptional more routine?"

Actually, I'd happily submit to more tests if it was to figure out why I've been so lucky, why I've responded to drugs the way I have, and maybe lead to answers that could pass some of that luck on to someone else.

"Scientists at the University of Edinburgh said they have discovered a “trigger” that allows breast cancer cells to spread to the lungs. . .

Prof Jeffrey Pollard, the centre’s director, said: “Our findings open the door to the development of treatments that target the tumour microenvironment, which may stop the deadly progression of breast cancer in its tracks.”"

"Researchers at the Department of Obstetrics and Gynecology of the Medical Center -- University of Freiburg have developed an approach for detecting breast cancer by means of urine samples. The method involves determining the concentration of molecules that regulate cell metabolism and that are often dysregulated in cancer cells. These molecules, referred to as microRNAs, enter into the urine over the blood. By determining the composition of microRNAs in the urine, the scientists succeeded in establishing with 91 percent accuracy whether a test subject was healthy or diseased."

"Countering previously held beliefs, researchers at The University of Texas MD Anderson Cancer Center have discovered that inhibiting the immune receptor protein TLR4 may not be a wise treatment strategy in all cancers. This is because TLR4 can either promote or inhibit breast cancer cell growth depending on mutations in a gene called TP53. . .

"This looks like a promising avenue to develop drugs for the worst kinds of cancers," says Brown. "However, if we wish to target this immune pathway, we better pay attention to the TP53 status of the tumor.""

Mine is not so much pain as it is a significant tightness throughout my right pectoral muscle and armpit region (to use the anatomically correct term, I'm sure) that no amount of stretching seems to alleviate (although yoga helps tremendously). Chris, if you're reading, I think monthly spa massages would help, too.

"“Pain is a psychological trigger for worry about cancer recurrence,” said Julie Silver, an associate professor at Harvard Medical School who specializes in cancer rehabilitation. “Treating PMPS really helps to relieve that anxiety.”

PMPS is generally defined as nerve-related pain that persists for at least three months after breast cancer surgery, though it can take up to six months to develop. It tends to occur in the upper chest or the underside of the arm, causing pain that women often describe as burning or shooting, and it sometimes presents, as it did in my sister, as an unbearable itch."

Dr Sushanta Banerjee, research director of the Cancer Research Unit at the Kansas City Veterans Affairs Medical Center, and his team found that aspirin may be able to ensure that conditions around cancer stem cells are not conducive for reproduction."

Friday, June 12, 2015

A little over three weeks ago our little family set off for Venice, Italy. I'd never been, and Italy was at the top of my list. You could say I pulled the cancer card when planning our family vacation. I may have said something along the lines of, "You've been three times. What if I never make it there at all?" Cue the violins, right? And so Chris indulged me, with the caveat that he gets to choose the next trip (which very well might be camping in Utah's canyon lands. Our vacation choices pretty well sum the two of us up.)

We toured between Venice, Florence/Tuscany/Sienna, and Rome over the next thirteen days. It was every bit as awe-inspiring as I'd hoped. Everyone keeps asking me what my favorite part was, and to be honest, I have to say the absolute sense of community -- the life lived in squares, enjoying the company of friends and family, lingering over dinners and a bottle of wine, the lack of smart-phones. It gave me a lot to think about with regards to how we live and interact with our neighbors and friends. The focus on togetherness -- without rush or to-go cups -- left me longing for more of that in my own life.

Also, I am deeply in love with Rome, especially its food. Next time, I might just do a culinary tour and forgo the museums entirely. Yes, I believe there will be a next time.

We'd been nervous about taking Quinn -- who turned four just three months ago -- to Europe for almost two weeks. Becausehow would he do on the plane? How many museums would we have to skip because he wouldn't have the patience for them? How much gelato would we have to bribe him with each day? These were the pressing questions we asked ourselves, never mind my energy levels or health concerns.

Tangent, sort of: I did get my doctor's permission to leave the country for two weeks. Since I'm on an every-three-week infusion schedule, it didn't interfere (much) with my treatment, and since my blood work has looked relatively okay for two years now (as long as I've been on Kadcyla), my oncologist wasn't concerned. I will say that traveling for this long made me realize I probably can't ever live in another country, or even leave here for more than a couple of weeks, tied as I am to my infusion chair and the insurance that pays for it. Small gripe in the grand scheme of things, but it's just one more way cancer limits your choices.

But I can't complain, not right now. We just got back from Italy, after all. And as for our concerns about Quinn?

We clearly forgot who we were dealing with.

Here's how to tour Italy with a four-year-old. Step one: make sure he's not on a nap schedule (ding ding ding!) We had that one down like two years ago.

Step two: Show him incredible views.

And put him up to the task of spotting all the lions in Venice. He will want to count them. In every language he can think of. "Mom, how do you say three in French? How do you say five-hundred in Italian?" "I'm not sure, honey," I had to say more than once. Or: "Let's ask Google."

Step three: Carry him in a backpack if necessary (walking six to seven miles a day is exhausting, after all, even for the energizer bunny himself).

Find more lions.

Let him go at his own pace once in awhile.

Show him extraordinary beauty (and make sure he knows he's part of it).

Look at the world through his eyes.

You might see incredible sights!

Let him slide on the bridges (so long as he promises not to fall in the water).

Take breaks.

Let him do some of the navigating.

Try not to have a heart attack as your husband picks him up higher than the railing when you're on top of the world (or on top of Il Duomo di Firenze).

Let him find some magic.

And chase some pigeons.

And more pigeons.

Take more breaks.

Carry him some more. Hey, he's a cute forty pounds!

This might be the most useful tip (and I've lost track of my steps): give him his own camera.

If all else fails, ply him with lots of gelato.

And pasta.

And hugs.

We are settling back in to life where we aren't saying, "Ciao!" at passers-by out our windows in the evening, where we don't have prosciutto and pasta and prosecco nearly every day, where we have doctors appointments again, and scans on the horizon, and temperatures in the triple digits.

Monday, June 8, 2015

Thanks for the great feedback about keeping this series here. (Although it seems as if once a month might be my posting schedule for a lil' bit.) I've been pulled in a lot of different directions lately, not all of them deserving complaint. And to all who checked in and suggested I stop to get some rest, I've taken note, I promise.

As I write this, we are were in the midst of reconnecting with each other as a family in Italy. The month prior to our trip felt like a strange square dance in which Chris and I kept passing Quinn off to one another without stopping to a) dance with each other or b) rest our feet as a family. We've needed this time for awhile.

This was my first time to Italy, and I wanted to pinch myself at every passing gondola or square with a lion-spitting fountain in its center. There have been moments since we arrived when I've caught my breath in my throat to ward off tears because these are things that a couple of years ago I thought I might never get to experience.

I might never come back. (Spoiler alert: I came back. But I'm still considering a future move to a pied-à-terre in Rome, on the off-chance I could get my insurance to approve Kadcyla infusions abroad and convince Chris that a sabbatical there makes sense.)

We're doing a lot of walking, so I'm not sure we'll get much actual rest for our feet, but we're being fueled by pasta and wine and gelato so I think we'll be okay. We averaged more than six miles a day, and Quinn kept up like a champ. We were more than okay. Now that I'm home, my body actually craves the movement...and the gelato. More on how to do a trip to Italy with a 4-year-old coming up in a post soonish.

Posts might be a little spotty here for a couple of weeks, but I'll try to manage an occasional photo of my bambino enjoying the sights. We had really terrible internet coverage when we had it at all, then I was too jet-lagged to even form sentences for a couple of days, and then I had chemo on Friday so I'm still having trouble forming sentences. But I do hope you saw some of the photos of Quinn over on my Instagram account.

"In its complaint, the F.T.C. called all four of the cancer groups “sham charities,” charging the organizations with deceiving donors and misusing millions of dollars in donations, including putting money toward personal expenses like carwashes and college tuition, from 2008 to 2012."

“Of course I wish I had more time,” she told the Jewish newspaper The Forward in 2009, after learning that her cancer had returned. “I would love to see grandchildren, to see weddings, to be a part of these amazing things for more time, but I love life and don’t want to spend any of it mourning the loss of that which I can’t have. I’d much rather embrace that which I do.”

""It is with broken hearts that Hallie, Hunter, Ashley, Jill and I announce the passing of our husband, brother and son, Beau, after he battled brain cancer with the same integrity, courage and strength he demonstrated every day of his life," Joe Biden said in a statement issued by the White House."

"Metastasis occurs when cancer cells break away from a tumor and travel to distant parts of the body—the most dreaded event for a cancer patient. It is a mystery why some cells are able to travel through the body while others are not. Researchers from the University of Michigan, comprising a team of oncologists and engineers, have developed a new technology to help unlock this code.

A groundbreaking new study released in “Scientific Reports” describes a device that is able to sort cells based on their ability to move. The device allows researchers to take the sorted cells and compare the ones that are highly mobile to the ones that are less mobile. Understanding the differences in gene expression between these two types of cells can help identify why some cancer cells can spread to other parts of the body."

To be clear, this is still in the earliest, pre-drug stages. Super cool stuff nonetheless.

"There are currently no approved treatments that specifically target the ability of HER2 cells to join together or with other proteins, an essential first step in tumor growth. Lupu and her colleagues are now confirming the antitumor activity of this potential HER2 “master switch” in animal models. They will then move on to clinical testing, and the investigation of drugs—such as mimetic agents, targeted antibodies, and small molecules—that could specifically block this site responsible for HER2’s oncogenic potential.

“This drug does not yet exist; it is a promising area of future research,” said Lupu. “We believe that there is definitely hope because this is the first time that anybody has identified any region that blocks homodimerization and heterodimerization, which will simplify the treatment of the cancer. Rather than combining two, three or four drugs together, this will be a one-stop-shop.”"

"Promising clinical trial results presented at the American Society for Clinical Oncology (ASCO) Annual Meeting 2015 show activity of the investigational anti-cancer agent ONT-380 against HER2+ breast cancer, in one case specifically against brain metastases and in another case in overall survival of heavily pretreated HER2+ breast cancer patients.

"I am thrilled to have been able to offer this therapy to a patient in her early 40s. She didn't have any other great treatment options that we would have expected to have any meaningful impact, especially on her brain. Now she's been on the study over a year. The mets in her body are gone and the brain lesion has shrunk down to a little nubbin. She's living a normal life, fretting about the family business and how the kids are doing -- normal stuff," says Virginia Borges, MD, MMSc, director of the Breast Cancer Research Program and Young Women's Breast Cancer Translational Program at the University of Colorado Cancer Center and one of the study's authors."

"Immunomedics, Inc., (IMMU) today announced that among 49 patients with metastatic triple-negative breast cancer (TNBC) evaluated for response to treatments with sacituzumab govitecan in a mid-stage clinical study, 31%, or 15 patients, showed a reduction in tumor size of 30% or more. They include 2 patients with complete response. Response assessments were based on the rules set by the Response Evaluation Criteria In Solid Tumors (RECIST 1.1). Adding the 22 patients with responses between less than 30% tumor shrinkage and less than 20% tumor increase, the disease control rate was 76%. . . .

The U.S. Food and Drug Administration has designated sacituzumab govitecan a Fast Track development program for the treatment of patients with TNBC who have failed prior therapies for metastatic disease and patients with small-cell or non-small cell lung cancers."

"A new drug that unleashes the body’s immune system to attack tumors can prolong the lives of people with the most common form of lung cancer, doctors reported on Friday, the latest example of the significant results being achieved by this new class of medicines.

In a separate study, researchers said they had found that a particular genetic signature in the tumor can help predict which patients could benefit from the immune-boosting drugs.

The finding could potentially extend use of these drugs to some patients with colorectal cancer, prostate cancer and other tumors that have seemed almost impervious to the new drugs. Most of the substantial results so far with these expensive drugs have been in treating melanoma and lung cancer."

"A type of immune cell can be primed to attack and eliminate various kinds of malignant cancers in mice, according to a study by Stanford University School of Medicine researchers.

The researchers studied mouse models of melanoma, pancreatic, breast and lung cancer and found that their technique could eliminate not only primary tumors, but also distant metastases throughout the body.

“The potency is impressive,” said Edgar Engleman, MD, PhD, a professor of pathology and of medicine at Stanford and the senior author of the study. “You actually see tumor eradication.”"

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.